Thought I would share my approach to treatment/chemo/surgery and Wellness.
I was finally advised that I am (sadly) Stage 4 - although I won't know until they are certain a liver lesion is or isn't a metastic one, similarly minuscule nodules at top of my lungs (which apparently show up in non cancer patients too, so again could be benign).
I am also A-typical because I have no abdominal spread to abdominal organs, only into lymph nodes in "outer abdominal sac" so if anyone else has presented like this I'd be interested to know.
Anyway, enough of the diagnosis, just thought I'd share how I am responding emotionally, particularly as I am sitting here with my first line of chemo coming into my body! Feeling OK so far.
It has really felt from the beginning that I am in transit. For me it's like taking a trip abroad on a magical mystery tour - when you know you are going somewhere, but have a lot of nerves re travelling and destination.
My analogy of this journey goes like this:
Step one: Arrive at check in: Get a shock when finding out potential destination. They cannot tell me the final place but to me this was when I heard the initial, unexpected and shocking diagnosis. Get boarding pass to ?wherever?
Step Two: Passport control: Final checks: Begin to assimilate diagnosis, denial, hopes and prayers that destination will not be as expected. This to me was like when all of the tests were being done (and later confirmed).
Step Three: Security Check: Place all "baggage" onto conveyor belt for inspection. This to me is the MDT meeting, when determining final treatment.
Step Four: Duty free: Shop for all necessities and luxuries for the journey, grab a manicure. I.e. Buy treats to help Me feel good and for chemo, fit in nails, massage, Reiki, try on wigs, buy books for inspiration and support.
Step Five (started today): entrust the pilot and aircrew ,board the plane and take off! I.e. Putting the trust in the experts to get me to whatever and wherever my destination maye be.
Step six (tomorrow onwards): The flight, some quiet reflective time, movies, food and drink, some turbulence anticipated!!!!!!! I.e. Living with chemo, adjusting lifestyle, feeling rough, feeling OK, gritting teeth to get through the bumps, holding on tight to my husband's hand when the plane dips, surgery, recovery, more chemo.
Step Seven (6 months time) Happy Landings and enjoying life at my mystery destination which is full of sunshine, blue skies and good health I.e Remission.
All of the above helped by the nurturing, love and support of my ground crew - family and friends.
Hope this may help any of you newly diagnosed, or already at some stage of the journey.
What I haven't decided yet is a name for my airline! Suggestions on a post card?
Warm thoughts and wishes to each and every one of you. x👍😎🛫🏖
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GillyN
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Hi Gilly. Absolutely love your post and your analogy to taking a trip abroad. I refer to my time since diagnosis as a journey but what you have said is really well put. I do hope you will keep us updated and reach your destination at 'Remission' and that you enjoy the delights of this destination for a long long time. Going to give the name for your Airline some thought. Wishing you well xx Kathy
Thank you so much for taking the time to reply and with me well on my journey. Much appreciated. Day 2 post chemo and no ill effects yet, but expecting things to be kicking in Wednesday onwards.
Like your sense of humor with your airline analogies. How about HOPE airline?
Yes I presented the same way as you in Oct 2011. Just lymph nodes in an, chest and neck.
I had 6 chemo, then hysterectomy, then 3 chemo.
I think looking back I wish I skipped the hysterectomy.
I don't think it was necessary.
Have you had a hysterectomy?
Diagnosed in 201 as stage 4 and now out of remission 4 years later and needing to Revisit chemo or an immunotherapy trial. I think I feel better to choose chemo as immunotherapy clinical trial is just starting with ovarian and dosing not perfected. It's the nivonolab with ippinolab trial (my spelling horrible on that trial but don't want to lose this post looking it up). The one with all the press that words with melanoma.
My CA125 is 502 up from 263 last month... So I need to climb out of denial...(feel like I may be a stowaway in the wheel well of your aircraft, sleeping in a frozen stupor of shock and denial from putting off chemo all summer) as I wanted to play with my 10 year old all summer! Now I must pay the piper!
What chemo drups are you taking. Do you have an IV port? What were your initial symptoms, mine was a lump on the right side of my neck. What was you ca125. Sorry so many questions!
Will be wishing you well. Keep in touch. Wishing you a permanent remission!
Hi Kathleen thanks for taking the time to reply and understanding journey.
Amazingly I had no symptoms at all until I had severe lower pelvic pain and was taken in to A&E with suspected diverticulitis, so obviously I was totally shocked when they told me what they initially found! And then the ongoing tests showed even more bad news. Up till then I was fit, very active, anymore bunny and healthy eater (though liked my wine)!
I have 2 more chemo's planned, then surgery planned for late January but don't know to what extent yet. Did they surgically remove your neck and other lymph nodes, or leave that to the chemo?
I have told the team I do not want a prognosis, at this time. I have read stats and they are concerning for Stage 4, so I would rather just stay one day at a time for now. And we all hope for miracles, which sound like you have had since 2011. Amazing.
Haven't really read much yet on research and trials, but know I cannot join a trial yet. Whatever choice you make will be right for you but coming out of denial would be advantageous, though I understand how it must be hard to continue to be a cancer patient and not just a wonderful grandma. My daughter had our first ever grandchild 9 weeks ago, so she has been a blessing and source of motivation
I can go on Avastin after but not before surgery. I had a hysterectomy in1988 aged just 30, also due to cancer but stage 1, so hence ovaries were kept (damn and blast).
Keep in touch and Hope is a good name, thanks.
HI Gilly, welcome to the Merry go round, not as solid as an aeroplane but just can be as adverturous as we want it to be at times. I actually did enjoy reading your post. Was wondering are you an air hostess with the plan of action outlined? Any how, it is a good plan and I am sure the pilot and crew will make your journey as smooth as possible over the next few months. Dont forget to ask the crew for more anti nausea or advice on constipation etc if you need it. Looking back, I found the first chemo scary didnt know what to expect, then hit a bumpy few days but got back on track again. I hope you wont feel too rough, maybe some smaller snacks would be better than the larger meals. Dry crackers or Carrs water biscuits should be in your cupboards for days you dont want to eat but nibble away. It is a scary time but we are all here for you and any questions you have just drop us a line. Dont be afraid if you get weepy or scared or cross, that is all part of the journey. Wishing you the best and do check in with us from time to time/
No I haven't been in the air industry, just took me back to when I have needed to put hope and trust in others when driving/flying! As a control freak, it's always been difficult, so I wrote this to ground me a bit.
Am feeling fine on Day 2 post chemo but expecting to feel something by Wednesday/Thursday when white cells drop. Hopefully all the tablets, snacks, smoothies and love of all around me will, help me keep going over the coming weeks and months. And I do also have Movicol. Lol.
What would we do without Movicol, one of my nurses told me to add hot water to it and also Milpar of course Milpar is gone but if the flight gets bumpy, try adding hot water to movicol and maybe Milk of Magnesia, a really joyous cocktail. Definitely will see white smoke as you fly by.
It's Carole from Orpington,just read you journey so far, I have finished mine to a point that you will reach where we are both in remission,we are all brave and cope with whatever is thrown at us and like I said I can drive to meet up in Broadstairs in the New year if that is good for you.Wish you well in your journey,you go girl! Xx
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